Understanding the Challenges of Transitioning from Pediatric to Adult Neurology Care

We’ve heard through many channels over the years that transitioning their medically complex youths from pediatric care to adult neurology care is one of the biggest stressors for families in the child neurology community. CNF works to provide tools to caregivers and clinicians to empower young adults through this change, and one of these tools is our Transition of Care workshops. Recently, I got to help facilitate one of these workshops led by Dr. Sarah Spence and Dr. Michael Sowell. 

CNF’s Transition of Care Workshop: Empowering Clinicians to Support Neurological Transitions

CNF 2024 Grants for Care Advancement Quality Improvement Projects

As part of our ongoing partnership with the National Coordinating Center for Epilepsy housed at the American Academy of Pediatrics, CNF provided a free virtual workshop for clinicians and healthcare providers wanting to improve transition of care. We had great attendance and an audience of physicians, nurses, and social workers who wanted to strengthen their knowledge base to better support children experiencing neurologic conditions. Because of this, we wanted to ensure that we provided a workshop designed to provide practical strategies that these professionals could implement immediately into their practices rather than a lecture about the problems everyone knows already exist in this area. To make sure this happened, we wanted to feature two neurologists who are leading work at their home institutions to improve the transition of care. Both of the teams led by Dr. Spence and Dr. Sowell were awarded CNF Grant for Care Advancement and Quality Improvement in Transition of Care or Care Coordination to further their work in transition of care.  

Using Toolkits to Foster Practical Implementation of Care Transition Strategies

Both faculty talked about what they’ve learned in their research and shared practical strategies on how to implement similar work at attendees’ home institutions in areas like Learning Collaboratives, telehealth and other innovative care delivery services, and EHR templates. After their presentations, participants were placed in breakout rooms and were given links to both the CNF Transition of Care Toolkit  and an epilepsy-specific toolkit developed by the National Coordinating Center for Epilepsy in partnership with CNF, American Academy of Pediatrics, and Got Transition. In these breakout rooms, attendees were encouraged to use those toolkits as starting points to brainstorm possibilities for implementing a quality improvement project like they had heard about from Dr. Spence and Dr. Sowell’s experiences. It seemed like this kept people engaged, and it seems like people were.

High Impact and Positive Feedback: The Success of Our Recent Workshop

I sent a post-session email, and respondents have currently rated it 4.8/5. One respondent noted that they “really enjoyed the seminar. I thought the speakers were informative and engaging, and the breakout sessions were also a good idea.” 

Building a Better Future for Children with Neurological Conditions Through Education and Collaboration

Being able to work with healthcare professionals is one of my favorite parts of my job. As a patient advocacy organization, one of the most important ways to develop a more accessible, empathetic, and effective healthcare system is to partner with and support those on the front lines of driving that change. These transition of care workshops not only provide education and resources to professionals, but also highlight the work of their peers who have been financially supported by CNF. For me, this part of my job emphasizes the interconnectedness of our work with both providers and caregivers most profoundly. To really create a world where all children with neurologic conditions reach their full potential, all of us must work together and learn from each other to build creative solutions.  

About Jessica Nickrand, PhD – Director of Programs

Jessica was drawn to CNF because of her passion for patient advocacy, and her belief that health care can be at its best when patients are empowered to be their own advocate. At the Foundation, she supports programs that aid the transition from pediatric to adult neurology, and that work with families to navigate telehealth. Before coming to CNF, she worked at the American Academy of Neurology delivering provider education, the Reilly Center for Science, Technology, and Values at the University of Notre Dame as a research director, and the National Academies of Sciences, Engineering, and Medicine supporting the efforts of the National Roundtable on Population Health Improvement. Jessica holds a PhD from the University of Minnesota in the History of Science, Technology, and Medicine, and a BA from Michigan State University in Social Relations and Policy with a specialization in Science and Health Policy.